Ibrance (Palbociclib)
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My MO has been very insistent that I get a flu shot.
And yes, my nails have ridge and are weaker. Add that to the occacionally burning scalp and watery eyes for the weird side effects. But I'll take them!
SkyFly, I don't have much to add to the conversation about dental work. As others say, work with the MO and dentists. My MO has given me nuetrephil booster shots and even antibiotics as a precaution the two times I've needed work.
And in response to your kind question -- I am wonderful! Just under two years ago, after a few weeks of steady deline, I collapsed in mind-boggling pain and ended up in the emergency room. They couldn't get a handle on what was happening to me, but were making it clear that my DH and I should be thinking about how to tell our kids (young teenagers then) that I was dying. My heart was broken, and I now believe I know what hell is like. It took a lot of testing to figure out what had happened to me, but I know that that this diagnosis was the best possible news in those circumstances. Two year later I am living a full and joyous life. I'm scared sometimes, and I have a little dark place that always nags in the back of my mind, but it feels like a happy dream that I am alive and doing so well.
Have hope!
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I have the same nail problems - ridges and very thin. I’ve found massaging nail oil or grape seed oil every day to make a big difference. I have a cute little roller of oil from a line call French Girl that I received as a gift and love it
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Hi folks - this is a busy thread! i love hearing from all of you. A couple of notes:
Skyfly - heartburn was awful for me with Ibrance. I started in a nexium 24 and it is gone. If I forget to take it for even 1 day, it's back full force.
Nails - strangest thing. The day that i started Ibrance, my nails stopped growing. Then they started again. So i have a full line break across each one of my nails that grew out over time. When it got closer to the top, they started to break off at the break. Now they are brittle but growing again but several are still way below the top of my finger. They are an absolute mess.
Lashes/brows - lost mine completely with taxotere in 2002. NEVER came all the way back. I use Latisse to create enough growth to get lash extensions every 3 weeks. I've been doing it for at least 5 or 6 years. Yes I am vain but it makes me happy though I shutter to think of what I have spent on my lashes in all this time. I also get microblading (tattoos) for my sparse eyebrows. It only lasts about 3 years and I think I've had it done 5 or 6 times. For some reason I've never grayed (I will be 49 in Nov) so I rationalize that all of this offsets what I don't spend in hair color. I get my hair cut 2-3 times a year.
Signed,
Vain in PA
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Joyner - what’s it like to hit a concrete wall with a boat? Yikes! Be careful out there in the Atlantic!
One more thing - Wills - we did ours, including the living will, about 1 year or two after we got married so we were about 30. My parents encouraged this. We updated it once when we adopted our son. I’m glad that I don’t have to think about it now that it’s so much more real - so encourage your adult children to do this early in life.
Candy - I have no advice for rural living - only admiration. 😊 I’m pretty sure I wouldn’t be able to function. Palliative care - did your doctor explain why you should avoid ibuprofen?
PS Jensgotthis - I will try grape seed oil / thanks! Good luck with your scans!
Cchilders- jeez - you have a lot in your plate. please know I am praying for you and hoping things get a bit easier on you very soon.
Muddling through - whine away.... fatigue, wt gain, pain and lack of hair growth are all major stressors. Be kind to yourself and your mother’s quote is the BEST.
So many smart and accomplished women here. How awesome that you are also a PhD, Dr. IntoLight!
Pat G - I am getting that book! Thank you!
Faith - Bless you for sharing your story and encouragement! I am praying right along with you that your single agent keeps all at bay for a LONG time!
Love to all,
Lauren
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Good evening Ladies,
crazeejane - I am so glad to hear that you did not have a PE.
I saw my MO on Friday and according to her I am considered in remission for now. I'll have a new MRI of my Thoracic/Lumbar spine in 2 mos to see how things look. I am being taken off of the Ibrance because in the 30 cycles I was on it I had 2 bouts of Diverticulitis and 4 bouts of Cellulitis in my right arm, plus 2 bouts of Sepsis since November 2015. Even though I've been on the 75 mg dose of Ibrance I've continued to deal with neutropenia that allowed these infections to develop. Especially the Cellulitis in my arm because of the lymph edema.
So apparently I am on to one of the newest drugs "Kisqali". At least once I get approved for the PAP to pay for it.
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Last year my Onc recommended a flu shot. Did not want to do it since never having one before then. Nails have ridges and keep breaking. Just got home from vac in Rapid City....beautiful place. Woke up with anode bleed this morning....go figure.0 -
Junie B - wow, you’v really struggled with serious infections! I hope kisquali is more gentle in your system and keeps you in remission. Congrats on that status!
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jensgotthis, thanks for the tip about grape seed oil.
Thanks to all of you for your experiences and tips.
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Penny-78. Glad to read of your successful treatment these past 22 months. I think you are one month ahead of me. I too, ended up in the ER bewildered why I couldn't breathe. AC and 3 weeks in hospital kept me alive. Thank goodness my liver didn't shut down. My DH was making end of life plans. I am on cycle 23 Ibrance 100, plus letrozole. Side effects, yes. But living and happy and stable.
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Junie You get to take Kisquli as a second line TX? I'm glad you'll be off Ibrance with all those serious SE you had. I know nothing about Kisquali. Is it immunotherapy? Are the SE more gentle? My MO says AA will be my second line.
I've been on a month break from Ibrance while I had a big scare about progression and while I w as on two vacations. I'm home now and back to reality. Vacations are great, but I'm happy to be home. While I was off any TX, my nails started growing. Reading here, I figured out why. But, I start back on Ibrance on Friday after I see my MO. Goodbye strong nails.
Eyebrows and eyelashes have never come back since Taxotere in 2001. I would love to have the micrblading done. But, I'm scared they will do them too dark and I will look like a witch! My hair is completely white, I'm 70 and grayed early. In fact a friend told me her girl would do it for free. I have a few dark eyebrows left and a few white. My hair used to be very dark, I still have some dark in the back down in nape area.
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Hi Grannax2. My MO initially suggested AA as next treatment, but at last discussion, she thought Faslodex and just continue Ibrance. So we have a plan assuming it is the aromatase inhibitor that fails. Kind of wierd to always have the next plan.
Hope your next scans show nothing exciting and you can finally relax.
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Hi all. Good to get caught up on this busy thread.
LaurenH- In answer to your question, the palliative care doc told me to stay away from ibuprofen due to the GI issues it can cause and it is hard on the kidneys. Side effects from everything, I guess.
Hope everyone has a Happy Sunday.
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SandiBeach so glad you are doing well too after such an ordeal! I'm in terrific company!
Junie congats on beating back the cancer! I believe there are now three CDK 4/6 inhibators. Kisqali is most similar to Ibrance and I've read that side effects are very similar. I'm curious that your MO isn't prescribing the other one (abemaciclib) as nuetropenia with that apparently tends not to be as severe. Hmmm. Do you know why? Anyway, I guess that technically you are changing First Line rather than moving on to second. Which is good. :-).
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Chani, good to hear from you. Shoot, you've got a lot on your plate. Hope things start to resolve, one by one, so you can focus on your health.
Pat, congrats on your 2 year I-versary. May it continue to do its good work on you.
Airlinegal, Rapid City and the entire Black Hills area is just beautiful. Glad you're home safe and sound.
I talked to MO about what to do about nails-she said ok to put strengthener on them, but advised against taking anything orally. I just trim them super short. Like many of you, lost my eyebrows during original tx and with Ibrance my lashes are sparse and wispy. I tattooed brows years ago, but the needles don't go very deep so it requires occasional touch-up. So for anyone worried about going too dark, they will fade over time.
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Hello Everyone!!! My weekend started off with a bang but is ending on a positive note as I sit here relaxing at home with my family. Friday night I went to the ER once again for the terrible pain I was having in the left side of my chest. After some tests and 2 doses of morphine, the pain was pretty much completely gone. So...the verdict is that it is a SE from either the Letrozole or the Xgeva that I will just have to deal with. They did give me a script for a pain med and I can take it when the pain gets severe enough to really be a bother. I did have a small melt down because I am not a big fan of having to take pain medication, and also because having to be in continuous pain just really sucks. But I guess it is just something I will have to get use to in order to fight this cancer business. I do plan on talking about this to my MO at our next appointment. After my ER visit my weekend got a whole lot better which is something I really needed. My husband and I took the kiddos to a movie yesterday afternoon, and then today my youngest daughter and I baked some cookies and just spent time together which was wonderful. She was super excited to be able to crack eggs all by herself without getting egg shells in the batter and it warmed my heart to see her so happy!! Then tonight my oldest child came for supper and decided to spend the night and head back to college in the morning which was also pretty wonderful. Another great part of the weekend was last night as my husband and I sat up till 2 am just talking about everything that has been going on with me and I was able to express some of my feelings and emotions about everything and it felt good to have him there to listen. So even though tomorrow is Monday and the weekend went by way to fast as it always does, I am in good spirits as I type this and I truly hope that all of you had a wonderful weekend as well. Much love to all!!!
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Crazeejane, those chest pains sound scary, but I am glad you have a plan for next time. Your family sounds wonderful. It is great to have that kind of support. Have a great week!
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LaurenH - Thank you. I hope so too. My MO said that the neutropenia would be less than Ibrance, but it also has one SE that some patients can develop. QT longation of the heart. So I'll have to have an ECG at 2 weeks, then at 4 weeks to check for this.
Penny78 - I did google "Kisqali" and the literature also said something about it interacting with certain antibiotics. I'll need to discuss this with either my MO or the specialty pharmacy. I had forgotten that there is another one of the CDK 4/6 inhibitors. I also asked my MO whether my changing from the Ibrance to the Kisqali would be putting me at risk of running out of options if/when I experience progression on one of these drugs. She said no, because if I have progression on one I'll no longer have an option of another drug in the same class.
Grannax2 - The Kisqali will be included with the Faslodex & Xgeva.
crazeejane - Very glad to hear that you had such a good remainder of your weekend.
Okay, off to bed now. I hope you all have a good coming week. Gracious, it will be October next week, already!
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Penny and SandiBeach: those are both remarkable stories! You’re both so hardy and I’m so glad that you’re both doing well
it’s very heartening that new CDK inhibitors keep hitting the market. I pray that an even more effective treatment is right around the corner.
CrazeeJane: that sounds awful, but I’m glad you got some measure of relief. Hopefully this isn’t a regular issue you face. I’m glad your hubby was able to bring you comfort. My family isn’t so good at these kind of heart to heart discussions0 -
Scanxiety strikes!
It's funny -- I've been overall in such a good headspace -- upbeat, optimistic, etc. And I still am ... really I am. But I just got the text saying that my 5-month scans are scheduled for next week. Whoa. Even though I knew they were coming soon I'm thrown. I think what's extra hard is that I'll be at 22 months. I keep remembering my first meeting with my MO where she told me that the trials were showing that 22 months was the median time to progression with this combo ...
I feel great and know that there's more data, and different ways to look at the data. But still!
P.S. to Junie: I know that there are trials, if one progresses on Ibrance and an AI, testing the efficacy of another CDK4/6 with Falsodex. So there's some thought that swtiching to another drug in the same "class" may still ne beneficial. (I know because, when I had a false alarm last year, my MO wanted to enroll me. Looks like you've done both and AI and Falsodex?
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Penny, I'm mid-cycle 29 and have taken several months off in the process. My former MO (yes, I fired him after he said amazingly mean things to me) said at least one useful thing to me when I was in your position months-wise. He said, "that median doesn't have anything to do with you." It doesn't even make any sense but somehow it made me feel better about my upcoming scan. I have my next Pet Oct. 3 and am not even thinking about it at all. Maybe that's because I also have two cataract surgeries scheduled for Oct. 8 and 22. Right now I am just really pissed at my eye surgeon because he pulled the classic bait and switch on me when he told me everything could be done here in Las Cruces when his fancy new measuring equipment is in El Paso only. I get the "portable" "manual" equipment if I want to have my eyes measured here. No one told me that even though I asked multiple times. DH wants to drive me to El Paso but I don't want to reward them for being dishonest.
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jaycee49: I know you did not ask for cataract surgery advise but here goes. I had both my eyes done in July. The commute was 50 miles for me (about the same as for you from Las Cruses to El Paso). It was worth every mile of the trip for me. The results were spectacular and I am thrilled. I understand you feel a bit deceived but you need to make a decision about the benefits versus being "po-ed". One thing they did for me to lessen the commute is they scheduled my post-op the same afternoon as the surgery. This saved me two extra trips into town. I felt so good afterwards we went out to dinner before heading home. Good luck.
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Jaycee49..good look with the cataract surgery. We are about the same as far as cycles..my pet/ct coming up Oct 5th....will be thinking about you for both.0
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Jaycee, thanks so much for that encouragement. And good luck with your surgery -- and your trip to El Paso. (My SIL lives there; I always like visiting but *not* for surgery!
Airilinegal good luck to you too. Looks like they've lined a bunch of us up for our scans next week!
PatG are you there? We (or at least I!) can use one of your pep talks!
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Wandering, I won't be going to El Paso. My two consultations and the surgeries are here, as has always been the plan. This surgeon does this surgery here twice a month at one of our big hospitals. The only trip to El Paso would be for the measurements they do before. I called the office again and talked to a tech that said they use this portable equipment all the time, even down there. The new machine is really for people with special eye situations and I don't have any of those. I'm ok with the plan now. (He still did a bait and switch.) The guy I was looking at doing it here had the first appointment available in March. I didn't want to wait that long.
Airlinegal, I've always noted that we are close in our schedules, as is IntoLight. My entire DH's family is in King's Mountain, NC, not far from Charlotte. Hope you survived Florence ok.
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Hi, Penny, I'm here standing on my little soapbox! I would love to place it over the head of any doctor who wants to limit one of us with statistics. That #22 means no more to you than the #5 of someone for whom Ibrance wasn't the right drug. The statistics are about comparing drugs to each other to see what gets approved or moved ahead in line. They mean about as much as somebody stamping Stage IV on your head!
I haven't forgotten the grim faces when I was diagnosed at 44 with Stage II BC that was negative for ER/PR (before they knew about HER2 so I was probably Triple Negative). I don't think those doctors would have bet a nickel I'd be here 25 years later. But I am. Each time I had BC again there was a new drug that hadn't been available the last time. My oncologist who is old and wise and was a researcher often tells me what a different world treating cancer is now. He says there used to be years with no new treatments and now he can barely keep up with the game-changing drugs with many more right there on the horizon!
He tells me there's no knowing how long the Ibrance will work because every one of us is different. He says we're always going for a cure so let's assume for now that this will be it. He has gone along with me lowering the dose to 75mg and the time to 3 weeks on/2 weeks off because Quality of Life means so much to me. One day I may be on here telling you guys I've had a scan and progressed but I will continue to do this with hope and with the knowledge that my life will be a complete life no matter how long it lasts.
I will never, never, never speak of myself as a Stage IV!! And when I think of all of you, I think of you as Stage Joy! (Now check yourselves for those Expiration Dates. Oh, you don't have one? Well, I'll be!)
Much love as I send up many prayers for you,
PatGMc
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Many thanks....0
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Aw, Pat, thank you. :-)
Much love,
Penny
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Jaycee49: Glad to hear you have firmed up your plan to your satisfaction.
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Pat - I needed to hear your words tonight. Thank you for being such a blessing for all of us.
Love to all,
Lauren
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I have my PET scan set for October 2nd (last one which was NEAD was in May), and I'm stuck on the boat in NY harbor with small-craft warnings on the ocean. Now I have to figure out whether to try to find another way home or change the appointment. This is lovely and all (Jersey City from Manhattan last night)...but really. Nothing like piling on a little more anxiety!
Hugs to all....
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